Often when we refer to new eating habits we refer to it as our “diet” or that we’ve made “dietary changes.” The problem with this language (and I’ll admit that it’s language I’ve often used myself) is that it equates these changes as “going on a diet” such as for weight loss. While some people with chronic pain or illness may want to lose weight, for many others that is not the goal. So I think calling these changes a diet is a big problematic. It’s also problematic for anyone who is struggling with body image or has (or has had) an eating disorder. Basically the word diet is the worst. Instead it can be way better to think of these as lifestyle changes. Maybe specifically nutritional lifestyle changes (since lifestyle changes can also include exercise, meditation, etc.).
I did not need to “diet” nor is it something I wanted to do. I struggled with body image when I was younger and honestly have not owned a scale in over 10 years. I don’t need it or want it. And yet, I wanted to make some nutritional lifestyle changes because I had heard from many people – healthcare professionals and just other Spoonies – that it can help with pain, inflammation, gut issues, etc. I struggled in the past to go on a “paleo diet” or really anything with the word diet in it. When I was hosting my podcast I talked to a few people who looked at lifestyle changes in regards to what we eat instead of diets (link to the podcast – there’s a number of episodes on this subject). I began to think, what if I tried some of these lifestyle changes, implementing them at a pace that feels comfortable and non-restrictive? That’s how I figured out what makes me feel good when I eat it, versus what makes me feel bad.
Lifestyle changes with food/nutrition can totally vary from person to person. I was listening to a podcast that I like this morning and they were also talking about chronic pain and diet, and how one person will advocate for this diet and another will advocate for that diet, and the whole wellness industry is silly. I would say that it really comes down to individual differences. No one person is the same (body or mind) and there are a lot of factors that influence health. Keeping that in mind, lifestyle changes that you make are best done if they are ones that work for you. There’s no guarantee that all of your symptoms will go away, or that you’ll go into remission. That was never my goal personally. I just wanted to see what might help. Taking that attitude and approach (and being flexible with “cheat days” when I need them) makes it much, much easier. At the end of the day, these lifestyle changes are just one way we can keep making the most of it!
I feel a little bit of unease writing this post because I don’t want to give the impression that I think it’s completely possible for everyone to do this. In fact, prior to my own personal experience, I thought this was highly unlikely if not nearly impossible even though I’ve read about others doing similar things (reducing ANA, reversing illness, stopping illness progression, etc.) through a lot of the same methods I’ve used. I only started with lifestyle changes in order to reduce symptoms and general distress so that I could do more values-based activities. All of what I did was with the guidance, help and advice of amazing holistic healthcare professionals – my naturopath, my psychotherapist, my physiotherapist(s), my chiropractor(s), and my massage therapist(s). My primary care/general practitioner/family doctor (however you want to say it) and my rheumatologist(s) supported my lifestyle changes but never advised me on them. They deal with medications, and frankly that’s fine. I also want to say, my intention has never been to go off any medications. I like an East-meets-West approach to healthcare. All that said, here’s what I did (in order of appearance):
Stress Reduction – I learned a lot of coping skills to reduce my stress from my psychotherapist and have had regular acupuncture sessions with a naturopath for several years (minus 1 year where I didn’t have benefits).
Tied in with the above, regular meditation and eventually yoga practice. I continued to reduce and manage stress through these means. Mindfulness in general can really help with anxiety, depression, and has been shown to reduce pain in many, many people, across many, many studies. I currently meditate 20 minutes (minimum) per day and do yoga 4-5x/week (between 20 minutes to 1 hour each day).
Exercise – my exercise routine began with some work with a personal trainer who worked with autoimmune disease in the past, and then going to the gym 3x/week. When the pandemic hit, I began working out at home with some basic body-weight strength training exercises. I currently alternate strength-training with exercises given to me by my physiotherapist and chiropractor. On top of that I walk around 10,000 steps per day. I find that it works best if I pace by splitting it up with breaks and doing the same amount of activity each day. My physiotherapist and I are working on building up my strength so I can do more and longer hiking (currently I can do up to 1.5 hours, once or twice/week).
Stretching – I’m giving this it’s own category because it’s not ‘exercise’ and yoga, while can be a great stretch, is much more than that. I do several stretches daily that have been given to me by personal trainers, naturopaths, physiotherapists, chiropractors, and massage therapists. I stretch every part of my from my jaw to lats to wrists to legs to back to toes. I probably spend about 15 minutes just on stretches each day.
Diet/nutrition – this is something I struggled with for a very long time. I was recommended paleo diets and AIP protocols and this and that and I struggled to stick to any of them. So I made my own protocol/diet by just paying attention to how I was feeling after eating different foods. Then I eliminated what doesn’t make me feel good. I describe my current diet as “gluten-free pesca-vegan” because I mainly eat fish/seafood and then a vegan diet (no dairy) and gluten-free. (I probably should cut down sugar more and reduce alcohol a bit more but I’m getting there). I’ve been on this “diet” since last November. What’s made it easier for me to stick with is actually that I’m cognitively flexible with it. What I mean is, if I’m out and there are no (or very limited) options for this way of eating, I just eat whatever. If I’m at someone’s house and they serve meat or gluten or whatever, I eat it. This happens at most once/week and often less than that.
This is just my experience. I’ve been able to go off of one medication entirely, one medication was reduce to “as needed” (granted I supplement CBD instead daily – 10mg), and my rheumatologist reduced one medication a few weeks ago from 2000mg/week to 1400mg/week. Despite my lower ANA I do still have some symptoms – a bit of inflammation, some pain, but overall it’s a lot better than it used to be.
Have any of you found a difference with lifestyle changes?
Keep making the most of it everyone!
Always seek help from qualified healthcare professionals before making any lifestyle changes.
The difference between the media’s version of self-care and healthcare’s version of self-care is huge. In the media we see bubble baths, spa days, “me time,” wine nights, and girls trips. In healthcare we talk about activities of daily living – showering, getting dressed, eating nutritious meals, doing light exercise, etc. I mean, I’ll admit that I definitely engage in all of the media’s version of self-care as well (well, I prefer solo trips to girls trips, just sayin’). And that’s fine. It’s totally all well to do all of that. As a person with a chronic health condition, I find it more beneficial to make sure all of my ADLs are done on a regular basis. Why? Because it helps not only my physical health (I’m literally more mobile when I do them), it also helps my mental health (mood is better, anxiety is less). Yet it can be hard to do these activities when we’re feeling low, when we’re super anxious, when we’re in a lot of pain. The thing is, doing them can help with all of these things.
I will start off by saying that a “top 10” is no way a comprehensive list, because there are lots of ways you can improve your health (or at least keep it at base line) when you have a chronic illness. A lot of this I’ve learned through my own trial-and-error, through my studies and work in psychology/psychotherapy, and from conversations with other Spoonies and healthcare professionals. So, this is basically my Top 10 list, and I’m hoping you can pull a few things out of it if you haven’t been doing these already. I’m also going to link some of my blog posts and podcast episodes if you want to have a deeper dive into these topics. Also, I couldn’t determine an order for these, so they are not necessarily in order of importance (assuming there is one)!
Eating healthy. This is so important and often overlooked. Eating food that is organic and free-range is ideal, though if you’re like me this might not be affordable. If that’s the case, throw in some of that where you can and otherwise focus on the food groups, especially lots of green veggies. Limit your red meats, and of course limit any food that makes your symptoms worse (for some people that’s gluten or dairy). Be open to trying out different diets (Paleo, Keto) or fasting – but always consult with your healthcare professionals first. Check out this blog post on eating healthy, and this podcast episode on living with allergies.
Drink lots of water. 6-8 cups a day is ideal. I’m currently doing a challenge through Shape and Foster and part of that challenge is drinking 1.5L of water per day. Honestly, some days I really struggle but I also notice that the days I drink that much water, I drink less other stuff (that’s not healthy) and I feel the best. Water is important for our overall health and can’t be overlooked! I’ve got a blog post about it, and it is an essential of health which I discussed on the podcast.
Take your meds! Medication management can be super annoying but you’re being prescribed them for a reason, and there is typically a lot of science around them. I sometimes forget to take my meds (not going to lie) but again, I do feel best when I take them as prescribed. This doesn’t just go for Western medication either, try out some Eastern ones (head over to a naturopath, chiropractor, or other practitioner) to get some holistic care going. I’ve got a blog post about health management, and a podcast about holistic options.
Sleep hygiene. It’s so important for our physical (and mental) health to get a good sleep. Our bodies need to feel energized and rested when we wake up. Spoonies definitely have extra challenges with sleep. I often toss and turn because I’m never comfortable. However, doing proper sleep hygiene can at least minimize some of these problems and get your a better sleep. When I have proper sleep hygiene, I notice a 50-80% improvement in my sleep! No jokes! Check out the blog post and podcast episode for more.
Exercise. Yes, exercise definitely helps with pain reduction, and can increase things like mobility. There is a ton of science behind it. That being said, you have to be careful not to go over your limits (i.e., just push yourself to your edge but not beyond it) because you don’t want to hurt yourself. Low impact is recommended for chronic illness (walking, swimming, etc). If you’re not exercising, then just experiment with small amounts and gradually work your way up. This is another area that it is important to consult with a professional on. I do an exercise vlog post every 3 weeks, and I did a full podcast episode on exercise too.
Spend some time outdoors. Interestingly I just did a post on this last week that got very few views despite the fact that there is again science supporting how much this can benefit both our physical and mental health. Step away from the city if you can, even if just a few hours. Take the opportunity to breathe in fresh air. Tie it into exercise by going for a walk. Tie it in to stress reduction and just let yourself be. Though I don’t have an episode specifically about this, there is a podcast on holistic approaches that ties in nicely.
Reduce your stress. Being calm, and having as little stress as possible (which I get it, sometimes just having a chronic illness is stressful!) is so important. Stress is a common cause of flares in many autoimmune diseases and in generally, always manifests into nasty physical ailments of one kind or another. This is a good reason to learn some mindfulness skills (which I do a vlog post on once a month). I did a whole podcast episode on how stress and anxiety manifest in the body as well – find it here.
Get involved in your care. This often means we have to be our own advocates for our health. That can include being a little “pushy” with our doctors (I mean it’s ridiculous that we have to sometimes but medical gaslighting is a huge problem). It also means that you may have to create a healthcare team for yourself. I’ve found this to be extremely beneficial for me. For more on getting involved check out this blog post and this podcast episode.
Self-care. There are 5-6 dimensions of self-care (depending on who you ask) and physical self-care is one of them. A lot of the things from this list apply to physical self-care, but you can also add a lot more, depending on what you like – I like Epsom salt baths! I also mentioned that challenge with Shape & Foster earlier which this month is putting an emphasis on physical self-care. Hear more about them on the podcast. I do monthly premium blog posts for self-care which you can sign up for here.
Goal setting. No one can be expected to make any changes to any part of their life – including the physical aspects – overnight. That’s why setting goals can be really helpful. If you’re not currently exercising, then committing to 3 1/2 hour walks per week might a good place to start. Or increasing your veggie intake four times a week. Or spending time outdoors once a week. Whatever it is, make a plan and make it one that is challenging and yet you can stick to. I recently did a blog post on goal setting. This is the podcast episode it ties most nicely in with.
Okay, this was a longer post than normal but I hope you have a few takeaways! Keep making the most of it everyone!
Recently I read an article in a psychotherapy magazine put out by the BCACC (British Columbia Association of Accredited Counsellors) about how therapists can and perhaps should integrate health promotion into their clinical practice. Being interested in health psychology anyway, and wanting to work with people with chronic illness as well as mental health problems, I devoured the article. Then I did a quick google search to see what others are saying. And while there are not a ton of journal articles on the subject, there are a few, all pointing to the same thought – this is something therapists should do. What makes it difficult is that psychotherapists, whether they hold a Masters or PhD (or not, depending on where you live they may not need either), typically don’t have a lot of training in health outside of mental health (always a little bit as it relates but rarely a large amount). This makes me curious as to what everything thinks about therapists encouraging health promotion, in some way, during counselling.
What this article really looks at is not just physical health or mental health but all components of health. A holistic approach. Sometimes people go to therapy for things like weight loss, which in that case, health promotion and education seems necessary. Other times someone might bring it up as a secondary concern. There’s also, of course, the interrelation between things like exercise and nutrition and mental health. As well as sleep and mental health. See where I’m going with this? It actually might be almost impossible for therapists to not integrate health into counselling. So, while I usually save this kind of stuff for my premium blog, I thought I would share some health behaviours I’m going to put extra effort into this week, and I hope everyone reading thinks about some that they can as well! Body-mind connection week indeed!
nutrition: I’m going to go with making sure I eat fruit everyday (which I typically do but sometimes stumble on the weekends)
exercise: putting yoga back back into my routine at least 2x/week
sleep: ensuring I don’t have anything to drink after 8pm (part of sleep hygiene!)
other (social, hobbies, gratitude, mindfulness): playing the piano daily (I haven’t been playing as much as I would like)
As you can see, integrating health is rather inclusive and definitely extends beyond just physical aspects. Medication adherence can be another really important one for chronic illness warriors. The article I read speaks about Maslow’s hierarchy of needs, which I’ve mentioned in previous posts. We need to take care of our basic needs in order to take care of our higher needs. The three basic components of physical health I mentioned above are so important. So here’s my question (and I’d love answers in the comments), would you want your therapist to help you with aspects of health promotion that you are neglecting? Why or why not?
Literally my least favourite question when I go into any doctor or specialist appointment is, “what is your pain like today?” or “on a scale of 1 to 10, 10 being the worst ever, how’s your pain right now?” To someone with chronic pain, these are the most useless, arbitrary questions. Here’s the thing, I understand why doctors and other healthcare professionals ask the question. They want to get a gauge on if your pain is better or worse than it has been in the past. It totally makes sense. However, there are a few things about chronic pain (and pain in general) that aren’t taken into account with this questions.
My perception of what a “10” is may be higher or lower than your perception of what that is.
I’m not always entirely sure what number I should give. Like really, what is the difference between a “6” and a “7”?
Often pain changes throughout the day, so just because I give it a “4” right now, doesn’t mean that it won’t be an “8” in half an hour.
And yet, this is always the first question asked at any appointment. Sometimes I literally just want to say “I don’t know.!” How many of you feel this way to? Plus, sometimes there is this need to want to give a higher number so that the pain is taken more seriously and not just dismissed. Here’s the thing that healthcare professionals often miss – there are better ways to describe pain than using a 1-10 scale. For example, “what type of pain are you experiencing/do you experience?” “What times of day are worst for pain?” “What activities or circumstances do you notice more pain or less pain?” “Are there any points in the day when you feel little to no pain?” And so on. These questions are easier to answer, and honestly, give a more realistic perspective of my pain than me guessing at a number to give my doctor.
The main model used in medicine (and psychology) right now is the biopsychosocial model (except sometimes doctors forget to use it when talking about chronic pain it seems). For those of you not familiar with this, it is the interplay between biological and psychosocial causes (or maintenance) of a medical (or psychological condition). When applying this model to chronic pain, we look at the biological causes of an illness or injury, and how psychosocial factors maintain or increase the physical sensations of pain. It’s that mind-body connection. Here’s an example: the hypothalamic-pituitary-adrenocortical (HPA) system in your brain has been associated with several chronic pain syndromes including fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, and MS. It is one of the biological causes of pain (though not necessarily the only). Psychological factors that can maintain or increase this pain include feelings of helplessness and hopelessness. Social factors and behaviours that maintain and increase pain include door diet and nutrition, lack of exercise, and substance use (including smoking). Stress is another major psychosocial factor associated with chronic pain. So, rather than asking what are pain is on a scale from 1-10, looking at these factors is likely more productive in both understanding and managing pain!
Let’s talk about pain management. Whether you do this on your own, or with the help of your healthcare team, here are some ways to improve your pain management (because let’s face it, chronic pain is unlikely to magically go away):
medication compliance – taking all medication as prescribed!
addressing psychological factors – such as anxiety – this could be through relaxation and meditative techniques or even exercise, or going to see a psychotherapist
utilizing interdisciplinary healthcare teams – do you have a family doctor? A specialist for your illness or injury? A psychotherapist? A physical and/or occupational therapist? Anyone else who can help you with your pain? (I also have a naturopath and chiropractor for example).
For anyone reading this who is not a chronic pain warrior, please remember that pain isn’t in our heads, and telling us to just deal with it isn’t helpful. In fact it can be stigmatizing, and people with chronic pain always face stigma because of a lack of understanding. We may laugh, smile and have fun, and yet be in pain at the same time. The things are not mutually exclusive. I’m going to link a few episodes of my podcast that complement this post below. For now, keep making the most of it everyone!
This episode has a special guest: my mom! She shares her recipe for protein pancakes, which are a healthy, filling way to have some pancakes. Personally, if I eat 3 of these, then I can totally skip lunch because I’m not hungry for at least 6-7 hours. My mom learned about protein pancakes from the pro golfer Phil Mickelson.
Nutrition is such an important part of keeping healthy, especially when you have a chronic illness. For more about the essentials of health, listen into this podcast episode with Dr. Steph!
So, I will admit that I don’t get brain fog too often. Maybe like once a month, usually at night, and it’s usually not too bad. It is one of the reasons that when I was working my rheumatologist gave me a note saying that I couldn’t work after 7pm (no one ever followed that rule exactly though, it would be 7:30 or 8 usually). However, on Monday I had serious brain fog.
The whole day felt off. I did yoga in the morning, then did school work, okay seemed fine. Went to a chiropractor appointment at noon. Still okay. Got home started to feel beyond exhausted. Checked the times for my discussion group for school – 7:30. Okay. Felt more tired (apparently I ran out of spoons really fast that day). Took a nap (I never take naps because they make me feel groggy) because I literally couldn’t stay awake. Got up half an hour later. Felt slightly better. Checked the times again for the discussion group – still read 7:30. Chill out for a bit, take a bath. Check the times again. Still read 7:30. Then 7:30 rolls around so I log in (after again just reading the 7:30 start time) and no one is there… Check the times again. It says 7:30 Atlantic time, 6:30 Eastern. Then I had a major anxiety attack and eventually got myself in the other group that night (discussion started at 9). I did feel a bit better later but geez was that whole day weird.
So what did I do between 7:30 and 9:00 other than freak out and join the other group? I did something that I wasn’t even sure was going to help but did a bit (not a lot but enough that I could actually participate in the discussion group). I played the piano. Music is great for the brain. In fact there are studies that suggest that learning to play an instrument can delay or reduce your risk of dementia. I purposefully picked songs that I knew how to play, are slightly complicated, and hadn’t really played for a long time. I forced my brain to work. Did I play them perfectly? No. I did play them well enough though.
To be honest, I’ve tried a few Google searches and there aren’t a lot of “remedies” for brain fog. Usually it’s just something Spoonies have to deal with, so either the day is a write off or you just sleep more or veg. I did find one article (https://www.healthline.com/health/brain-fog#treatment) that offers a few ideas that I think I’ll try to keep in mind (though I’m pretty sure piano will be my go to). Making sure you are getting enough sleep at night (8 hours), manage your stress (meditations or yoga anyone?), not drinking too much alcohol or caffeine, doing exercises for your brain (puzzles, word games, piano), and proper nutrition (protein, fats, vegetables and fruits!). Okay so none of these are a cure but I’d be willing to try any and all if it means that the brain fog is even less bad in the future. In fact, probably doing a lot of this on a regular basis would help prevent brain fog (and as I mentioned I don’t get it often).
What are your thoughts on brain fog? Anything that works to help you? Comment or DM me on Instagram @janeversuspain.
If you’re looking for a healthy and delicious breakfast idea, this might be a good place to start. The egg gives you protein, the veggies are all super health and full of nutritional benefits, and the bread can be whatever you prefer! Thanks to my friend Charity for helping me up my avocado toast game!